After camp, I started ninth grade, in the local high school. We set it up so that I wouldn't have to carry too many books around with me. I had a note from the doctor limiting some activities for gym class. That was it.
The year started off ok. I was in pain, of course, but not too much more than usual. The girl in my first hour class insisted on kicking my chair, which hurt, and I couldn't get her to stop! She was really mean. She made fun of me for the rest of the year.
As time went on, I became depressed. I couldn't talk to my mom about the pain. Her response was always, "Well, I can't do anything about it." Or sometimes it was, "People have different pain tolerances, and you have to build yours up." Horrible things like that. I was going nowhere, fast, and I was the only one who knew it. I relied on my online friends on my listserv. The support I got from them helped a lot. Finally, one day, a friend convinced me to talk to my mom. After reading her e-mail, I went to my mom in tears. I told her everything, how I felt, my online support group, and that I needed some answers. She agreed with me, but she didn't know what to do about it.
A few days later I came home from school in pain, for the first time. I think I banged my ankle into something or got kicked, but all I know is that I was in pain. My mom wasn't home, so my grandma picked me up. When my mom got home, she called my grandma to talk to her. My grandma asked my grandpa what he thought we should do. He suggested that we make an appointment with his new partner. He said that his new partner was smart and good at finding answers. My mom called my grandpa's office, and this guy was booked! Fortunately, he agreed to see me on his day off. He wanted my complete medical records before I came.
My appointment was for a Thursday morning. I brought my backpack along, even though my mom and I were both sure that I would have time to go back to school! It was a good thing I didn't leave it...the appointment lasted over four hours, and almost none of that time was spent waiting! He went over every inch of my medical records, and I told my story. No mention was made of RSD at all. Then, he examined me a little bit. After examining me, he gave us his opinion. Not a diagnosis, an opinion. He thought I had RSD. He then read a definition of RSD out of a medical book, and we discussed medication choices. He recommended that I try Neurontin, an anticonvulsant, and my mom and I agreed.
Well, Neurontin knocked me out. Totally. I was in a drugged haze for the entire three weeks I was on it! I missed school because I was dizzy and in a fog. It also didn't help my pain, so he had me stop it.
He decided that I should go to a doctor who knew more about RSD than he did. He sent me to a little friend of his, the ambulance chaser of doctors! The guy looked at me a little bit and decided I didn't have RSD. He told me that I had "chronic pain syndrome"...which is NOT a diagnosis, by the way! Then he told me that I had a low pain threshold. I started screaming at him. I wasn't going to take this from a doctor again! Boy, did I let him have it!
My mom got mad at me for that. This guy was supposedly doing my grandpa's partner a favor by seeing me. After an hour or two of screaming, my mom finally started to see my point. We called my grandpa's office when we got home, and the doctor said he wanted to see me. His little friend had talked to him before I got a chance, and I was scared. I made an outline of what I wanted to say, to make sure that I didn't forget anything. I wasn't taking chances.
Well, my grandpa's partner proved himself. He listened to me fairly, and agreed that we should forget his friend's opinion. He said that he was going to ask around, to find the best RSD doctor around. He came up with some rheumatologist at the medical college.
I had a bad feeling about this guy before I even went. I actually tried to refuse to go, a few days before the appointment! It didn't work, and I went.
The doctor was really old ("Oh, him...old guy, huh!"...as my current doctor said). He took one look at my medical records, saw that I had a normal bone scan, and told me that I didn't have RSD. He didn't even look at my ankle. He proceeded to push on different parts of my body, and each place he pressed was tender. He said that I had fibromyalgia, not RSD, and that I should exercise every day and I'd be fine! I wasn't happy, and I questioned him thoroughly. He came up with answers, but I wasn't satisfied. He told me to go home and research it.
I went home and spent the afternoon looking up fibromyalgia on the computer. I thought that I probably had that, but I wasn't so sure that I didn't have RSD too! My symptoms of pain in joints other than my left ankle and right shoulder fit the description, as did the fact that I had all 18 of the diagnostic tender points.
It was spring break, and the Jewish holiday of Pesach (Passover). My mom had made something new, called matzah crunch, and it was on a pan in the refrigerator. I opened the refrigerator door to get a bottle of soda, and the whole pan of matzah crunch slid out and fell on my left foot! I screamed, and then I cried for a while.
That was the worst flare I had ever had. My ankle hurt horribly, and I couldn't stand to have ANYTHING touch it. I had a little bruise where the pan fell on my foot, but my ankle turned blue, swollen, and cold. Classic RSD symptoms, which fibromyalgia cannot and does not cause. I showed my mom and she agreed with me. We made an appointment to talk to my grandpa's partner again.
This time, he failed. Instead of investigating further, he told us that the rheumatologist I had seen knew much more than he did, and that he wasn't going to go against what he said. We discussed the exercise program, and we decided that I should put it off until after school was out. He gave me a prescription for a sleep medication. I was not satisfied.
A month later, in April, my mom was wrapping a present, probably for my cousin's birthday. We keep the wrapping paper on the top of the refrigerator. I opened the freezer door and a basket fell on my right hand, which the RSD had spread to a long time before.
I spent about ten minutes screaming and a half hour crying. I convinced my mom that I needed something for pain! The next day, she called the doctor. My right hand got swollen, intermittently cold and discolored, and I lost a great deal of my range of motion. The doctor suggested that we go to a local pain clinic, run by an anesthesiologist.
The preliminary forms that came in the mail asked for a lot more detail than the other places I had been to. For diagnosis, I put down fibromyalgia and nerve pain.
The clinic was tiny but nice. The doctor was in a wheelchair, from a severely fractured leg from a recent car accident. She directed the nurse in examining me. At the end, she asked me if I had ever heard of reflex sympathetic dystrophy. She told me that if my RSD was "full-blown" I would have a claw for an arm, but that the fact that my RSD wasn't "full-blown" didn't mean that I didn't have it. Finally, someone believed me! She started talking about a nerve block, but I said that I was scared of needles. She decided to try an "electrical nerve block," with a machine that zaps the nerve through the skin, like a gigantic TENS unit. I had a whole bunch of those. They were pretty much useless, since you can't block a nerve through the skin like that! I wanted them to work so badly that I imagined that they helped a tiny bit. The placebo effect.
The flare from the basket incident, which rendered my hand almost useless, ended after two weeks. I continued with the worthless electrical nerve blocks. I had started to miss a lot of school, from pain and fatigue. The doctor wouldn't put me on any medications, saying that she was scared of future side effects. That really made me angry!
Sometime, in late May, I became even more depressed than I had been. I was believed, but I was still going nowhere! The doctor wouldn't give me any medication, and she wouldn't do a nerve block with sedation. I did the only thing I could think of: I threatened suicide. I really wouldn't have done it, but it worked. The psychologist and my grandpa's partner (my new pediatrician) started me on a low dose of an antidepressant for sleep, called Remeron. It worked well, and I finally made it through a whole week of school after starting it.
